The Year in Review on Thursday, December 18, 2014

We had many adventures this year! Here are a few highlights and snapshots…

First grade!

Right now, the biggest adventure of 2014 feels like first grade. Oscar loves, loves, loves first grade! Oscar came home from kindergarten every day last year with a report that his day was “AWESOME!” Repeatedly this year Oscar has said, “First grade is SO MUCH BETTER than kindergarten!” Oh, how we hope this enthusiasm and joy for learning sticks. At Oscar’s teacher conference earlier this month, his teacher, Mrs. Beato (who is so amazing—we feel so blessed) reported that regularly when she announces an activity that the class is going to do Oscar’s response is a “YESSSS!” accompanied by the fist/pull-back of the elbow gesture of excitement. She said even when it is a small activity that she expected no real response to, Oscar’s enthusiasm is palpable. We feel so lucky that his joy and zest for life and learning is so intense. That’s just who this boy is.

First day of first grade!

Oscar’s kindergarten  day was a half day, and he has made the transition to the full day very well. Though he is often tired in the evening, and goes to bed much earlier than he used to, he’s delighting in that full day of school so much. It has definitely been a big transition for our whole family: Oscar has a whole lot less down time—even after school he has aqua therapy, physical therapy, music therapy or massage therapy a minimum of two days a week, but usually at least three. Since he goes to bed earlier now, our evenings as a family have been cut short, from what we were used to. And Ghi Ghee (my mom) is missing her two (or more) afternoons a week she used to spend watching Oscar while I was at work. I have been surprised that first grade has been a bigger transition for ME as mom than the transition into kindergarten was. Now that he is in school full day, he has a whole life outside of us, and away from me. I was used to him giving a blow-by-blow of his day in school. The day is too packed for him to share it all now. As much as we miss hearing everything, we are so proud of him that he is becoming independent and learning to navigate through the world without us.

Creative Endeavors

In the spring, David played a show at Writers & Books and on the last song, Oscar unexpectedly joined him on cymbal, intuitively knowing just when to crash with the drumstick, and when to play softly with the brush.

Oscar continues to draw. This is a storm trooper with a tooth brush.

And every so often on a Thursday night David can be found spinning records at one of our favorite restaurants, Good Luck—always advertised for with a handmade flier…

David and I worked hard at finding time for our own creativity, carving out little moments when possible. David played a few shows this year, took a couple of fiction writing classes, did some recording, wrote some short stories, and took some great photographs. I finished taking an 8-month memoir-writing class at Writers & Books, joined a new writing group, and even spent two days and two nights at the W&B Gell House, in the woods, alone, writing!

My view for two days of writing at the Gell House.

AND for the first time ever, in our twenty-year relationship, David and I joined our creative forces by creating a show for the Rochester Fringe Festival. The show, Are You Able?, combined music, spoken word, and images (mostly of Oscar, and artfully compiled and presented by our dear friend Tom Kowal). As we always strive to break the physical barriers that might keep Oscar from accessing the world in some way, this performance piece hopefully sparked some conversation to help break psychological barriers that can exist between the able-bodied, and other-abled.

Friendship

Oscar participated in his first field day at school at the end of his kindergarten year. His PT, 1:1 and all the staff—and students!—helped really make all the activities accessible to him.

Oscar’s social life continues to expand. First grade seems to be the perfect environment for blossoming friendships—in fact Oscar’s 1:1 says she has stepped back quite a bit this year because 1. Oscar is becoming more independent and 2. his peers are stepping in to help him more this year. With a longer school day, he also has more opportunities to develop friendships—we hear stories from the playground, lunchroom, and classroom each day. Oscar and his pal Anne (who was also in his kindergarten class) have become quite close this year:

Dracula and Candy Corn trick-or-treat together.

And a trip to the George Eastman House to see the gingerbread houses:

Over the summer we were able to have a long overdue reunion with some dear friends. After 5 years away from one another, there were many laughs and good times!

Sarah, Dave, Lucas, Hailey, and Scarlet, who are like family to us.

And Thanksgiving was another delicious and successful endeavor with our dear friends—this tradition is 9 years in the making, now.

Fellas full of love on Thanksgiving: David Andrew, David Michael, Oscar, & Tom.

Sacaduros! The magic of Thanksgiving. Donna, Monica, & Sally overtaken by the magic after a long and joyful day of cooking, moments before digging in.

Summer

We had another amazing trip the the Families of SMA conference. In case you missed our blog post on that, you can see it here.

At the FSMA carnival night!

We celebrated Oscar’s cousin Emily’s high school graduation.

Oscar had his first summer camp experience at Writers & Books (where Sally works) and it was a big hit! He took 3 weeks: Fairy Tales, Magic Tree House, and Musical Sandbox.

One chilly and rainy summer weekend, we set our tent up in our back porch and slept (almost) outside!

We took Oscar to Sea Breeze, our local amusement park, for the first time this summer, and he had a blast! They were very accommodating to Oscar’s needs. He really enjoyed this airplane ride with his dad, and also the Lazy River in the water park, which we went on five times!

Health and Well-Being

Oscar is doing great! Aside from a pair of week-long illnesses this school year, including what was possibly the dreaded enterovirus, his health has been been pretty ship shape. All of of his therapies are proving to be beneficial, and we are thrilled with his therapists! Oscar increased his aqua PT to twice a week this fall, and it has been great! He has gotten very brave about putting his face in the water, and has held his breath for a record 56.75 seconds! The water is great for his strength, flexibility, and respiratory health, and he loves it!

Some more moments from 2014…

We end the year in gratitude, for one another, for all of you.

Oscar at Durand Eastman Park, 2014, or is it Bob Dylan circa 1970?

2014 Year in Review—COMING SOON! on Friday, December 12, 2014

Please check back soon for news and photos from the Merulla-Bonn family from 2014!

Visiting the Mainland on Thursday, July 31, 2014

It does take a village to raise a child. We adore our village. We are endlessly grateful for our village, near and far. But truth be told, where SMA is concerned, we live on a tiny little island. A deserted island, in fact. Once a year we get to go to the mainland: the FSMA conference.

In June, we attended our fourth FSMA conference in five years, in Washington, DC (actually at the National Harbor in Maryland). We stayed in another ridiculously fancy hotel.

View from the balcony of our room!

Upon first arriving at the hotel, two days before the conference officially started, we ran into some FSMA friends and these four kids proceeded to chase each other around the fancy lobby, at FULL speed. They did circles around one of the pillars, with no care that well-dressed business people were coming and going. Wild, free, unhinged: childhood.

After the rollicking game of chase, we left the hotel to go have dinner with Nonnie, Oscar’s great-grandmother, who lives close by.

When it comes to SMA, we have always answered Oscar’s questions as he has asked them, and never provided more information than he has requested. He has heard the phrase “SMA” a thousand times around our house and certainly in doctors appointments, and he knows that we go to the FSMA conference every year. However he has never indicated, nor asked, whether he has SMA. In talking about his “condition” (for lack of a better word) he always says (as do we) that his muscles work differently than others and he is not strong enough to stand up, so he uses a wheelchair. On the car ride over to dinner that night, Oscar asked casually, “Do those girls have SMA, too?” In the privacy of the front seat, our jaws dropped open. That word, too, is what did it. It’s the first time he has verbalized having SMA. That he named himself a part of this group in this way. We never told him anyone else had SMA either, though just days prior we had been talking about how he probably knows more about his diagnosis than he lets on. We have always helped him find camaraderie with others in wheelchairs, others whose muscles also work differently. In some ways it is a relief, to know we can all talk a little more freely. To know we have permission to use the name, “SMA.”

This year the conference was all about Oscar. He is old enough now, and outgoing enough—and mature enough—that he jumped right in and met people left and right, and made lots of friends. Kids, teens, adults. People in chairs, people who walk. In previous years he has not wanted to go into the kids’ room, because they show movies there and they might be scary or inappropriate (his words). This year he kept saying, “I’ll go but I might not stay.” Oscar suggested David stay to watch the magician with him—and he did, for half an hour—then Oscar kicked David out! And Oscar couldn’t wait to go back the next day! He even watched parts of the Hot Wheels Movie, Shrek, and Little Rascals! And played Super Mario Brothers! All this in addition to doing a bunch of cool crafts, and hanging out with some new friends!

Stevie & Oscar socializing with Leslie, Karen, & Kat at the meet-n-greet the first night.

It’s hard to believe we had only met Stevie Hopkins (Director of Awesome from the 3E Love wheelchair heart company) once before—at the FSMA conference in Minneapolis, two years ago. We have kept up with him online though, and it was a thrill to see him again! A girl at the conference saw Stevie and Oscar talking and asked if Stevie was Oscar’s uncle. I think Stevie and Oscar were both equally honored by the suggestion, and we now call him “Uncle Stevie.”

We saw many familiar faces

Oscar and Sarah!

Oscar, Heather, and our friend Monica cruising the streets of the National Harbor.

and met many new folks

Scarlet (age 3) and Oscar became fast friends!

Oscar also became great pals with Gavin (Scarlet's brother who is just one month younger than Oscar). They had so much fun in the kids' room together, in fact, that Scarlet got a little jealous!

Oscar also made fast friends with the volunteers!

...and sweet Blaise...

and Claire and Lauren Gibbs (who started an amazing Facebook page: Humans of SMA. Check it out)!

As usual, Ghi Ghee came along to the conference.

In addition, this year, THREE of Oscar’s physical therapists came, too! His school therapist, Barb Flender

And his aqua therapists, Kat DiNicola & Karen Terp.

They all attended the day of continuing medical education conference that FSMA now offers, and also all came to some of the social events and/or part of the family conference as well. The conference seems to have made a lasting impression on each of them, and they all used the phrase, “next time” in one way or another, indicating they are each planning to attend again sometime. We are overwhelmed with gratitude for their presence. It means the world to us, knowing they, too, have visited our mainland.

This year, one of the sessions we attended was on breathing basics for type II. This is a session that happens every year, and we had not attended it since our first FSMA conference, four years ago. Then, we were terrified. The name “cough assist” sent shivers up our spines, and that was the most tame name of a respiratory support device in the session. Now, using a cough assist is as second-nature as brushing teeth. We were reassured as we sat through the session that we are doing all the right things.

Every year, for the last few years, the volunteers host a dance party. This year, part way through the evening, they played the limbo, and held up a feather boa as the pole to duck under.

They moved the boa to all different heights to accommodate everyone from kids in power chairs, to adults on their feet, to type I kids of all ages in reclined wheelchairs, to babies in strollers. The joyous energy was infectious, and I started to tear up as I watched these volunteers embrace every single person in the room as completely “normal.” There was just pure love and acceptance. Everyone was equal. David and Oscar went through the line a few times, having a blast. I honestly just stood there, overwhelmed with the beauty of the moment.

This conference is a gift. Despite the most amazing village we hail from, no one in that village can know first-hand what it is like to raise a child with SMA. We are alone in this way, in the day-to-day. But on the mainland, we can talk freely about sleep and our collective lack thereof, and laugh about it together. We can toss around acronyms like TLSO and biPAP and not have to explain ourselves—and we can trade tips about using each—along with a myriad of other equipment. We can commiserate about accessibility issues and celebrate the successes of our kids being fully included. We can watch with unleashed joy as our kids chase each other full-throttle through the hotel. We can be natives of the mainland for three full days each year. These three days allow us the room we need to breathe for the rest of the year. The reminder that we are actually not alone.

We are filled with gratitude for the amazing Families of SMA.

30 Days of Yoga for FSMA! on Monday, March 17, 2014

(photos from past FSMA conferences)

It’s been too long since we’ve written! Sometimes we’re just too busy living life to write about it…

My first experience with the organization Families of SMA was days after Oscar’s diagnosis when I timidly visited their website for the first time. I saw a photograph of two children from behind—a young girl in a power wheelchair with supports holding her head in place, and a little boy walking beside her, holding her hand. This photograph, at that time, made me sick to my stomach. Would that be my little boy? How soon would he not be able to hold his own head up anymore? Also, on that first brief and terrifying visit to www.fsma.org, I read the words, “Life with SMA doesn’t have to be any different,” and I got angry. Really angry. How dare they tell me that? My whole life has just been turned upside down and is quite different from anything I ever expected.

A few weeks later a large package was delivered to our door with an FSMA return address. By large I mean easily two-and-a-half feet high, wide, and deep. I was scared to open it at first. What scary things associated with this new diagnosis could be lurking in this box? But the contents were not scary at all: a bumbo chair, bubbles, nerf ball, squirt gun, jack-in-the-box, a dvd, and a handful of other toys.  I was dumbfounded that strangers in an office in Chicago had sent this box of gifts to our family. The generosity itself present in this offering meant more to me than the items, and indeed turned out to be symbolic of the nature of the organization.

Six months later, the three of us, along with my mom, boarded a plane to California to attend the annual FSMA national conference. We were like deer in the headlights arriving at the hotel where over a thousand others were also gathered for the same purpose. But there we met others who were living the same new normal as we were. We found a community that has become like an extended family.  Each year now, we look forward to the FSMA conference with great anticipation—a chance to connect with other families affected by SMA, and to learn from the top SMA researchers from all over the world.

Today, I can look at that same photograph that is still on the website and delight in the beauty, the independence, the love that is depicted (and incidentally that power chair the girl is driving is the same model that Oscar uses today). Also, I can find real truth in the words that first made me so angry. When we are able to openly embrace all that comes our way, indeed life doesn’t exactly have to be so different with SMA.

But what does all of this have to do with yoga, you might ask? My friend and colleague, Kristen Zory King, is doing a 30-day Bikram Yoga challenge to raise money for FSMA, in honor of Oscar. For those of you who don’t know about Bikram yoga, it is also known as “hot yoga” because it is done in a 105 degree room. The same 26 poses are performed twice during each 90-minute class. And Kristen is doing it! She’s 16 days into it already! Kristen is keeping a regular blog about her experience and she has an indiegogo page she is using to raise money.

Kristen, during last summer's Harry Potter Birthday party at Writers & Books! Always championing a good cause!

Kristen’s commitment to 30 days of yoga has inspired me. There was a time in my 20’s when I was attending Iyengar yoga classes twice a week. Now I can’t remember the last time I had an exercise routine. Hell, I can’t remember the last time I got any exercise that didn’t involve lifting Oscar. So, I have decided to take on my own yoga challenge this month. I am committed to completing a minimum of 4 minutes of yoga per day this month. Why 4 minutes? This is about how long it takes me to complete two rounds of sun salutation, and that is about all I can concretely commit to. And indeed 4 minutes of yoga a day is making a difference!

Kristen was worried that she set her fundraising goal too high at $500. She surpassed it less than a week into the challenge. I wasn’t surprised. My goal is to see how far beyond her original goal we can go. Double? Triple? Kristen has set some fun parameters for possible donation amounts ($20 vote of confidence, $30 dollar-a day, $52 dollar per pose, $105 dollar per degree). I’d like to offer up my own level of support, the Sally Special: $4 for a dollar-a-minute!

What really matters though, is spreading awareness about FSMA, and the way they are making a significant difference in the lives of so many. In addition to the incredible support they provide through care packages and the annual conference, they have also funded over $55 million in SMA research in the last 30 years. A million thanks to FMSA!

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